Living with Chronic Pain: The Struggle of Days Off

It took my mother hearing me repeatedly tell her on errand days that I was too tired and sore and in pain from running the necessary errands to do the fun stuff I specifically begged to do for days or weeks prior for her to realize I was feeling AWFUL and not just being dramatic Able bodied people seem to think we have a switch we can turn off our pain with and go out and do fun things, but it doesn't work that way. I don't think they realize that if I had my way, I'd be able to go out and have fun and do all the things I want to do. I'd have a full time job and meet new people and make new friends and LIVE I don't enjoy my condition, and a lot of people who don't experience what I do seem to think I do. I've been called lazy, self serving, selfish, and many other names because I'm unable to do anything but the bare minimum due to my pain levels. Most days I can't even wash a dish or cook something for myself, I'll survive off snacks like peanut butter crackers and granola bars and electrolyte drinks. I most definitely don't like it, I'd love to have a hot meal and sit with my family and enjoy myself, but I just CAN'T Able bodied people seem to think this is some dream come true where we rest more often than them and "get to relax", but I'd rather not do any of those things and not be in pain. This isn't fun for us, a lot of us are suffering, but we're expected to be the "positive disabled person" or else we're bitter. We can't be upset about ableism or else we're "unwilling to educate others" or "not doing the work" ourselves. Lots of people are going to end up disabled in their lifetimes, be it due to something like long Covid or age related conditions or accidents, there's always a chance of becoming disabled, yet these people don't care until they're in this position. I've been mentally disabled since childhood, and nobody cared until I couldn't be a productive member of society. Until I had nothing to OFFER. Disabled people are more than they can offer to capitalism or society, but able bodied people will never understand until they themselves are disabled, and by then, no able bodied person will listen to them anymore

Preach - expect I used to push myself to do those things. Then I realised I regretted it every damn time. I now choose who I share my energy with sparsely and at 28 have concluded I will be a cosy cottage core queen with no regrets (HSD/hEDS, ASD, fibro)

I don't know. It's so frustrating. It doesn't seem like it should be a hard concept. Don't we start teaching empathy in kindergarten? I'm not you is completely foreign to my family

Yes 😞 Sle adhd autism ptsd gad and more over here I have no life and wish people had more sympathy honestly I feel so alone and stressed about it my lupus is awful and stops my life in every way

In the exact same boat. I’m 25 & have EDS, ADHD & PTSD. & I’m meant to be out being active on days off work. They do me in enough I hurt all over & am completely overwhelmed mentally on days off.